ALS, also known as Lou Gehrig’s disease, is a devastating disease the effects of which many people are unaware.

Debbie Fortune knows this terrible disease all too well.

“I met Mark (Doan) at the Grimsby Sobeys five years ago. We worked there together,” she explained.

“We started dating in September of 2010. We fell in love. He was the man I had been looking for my whole life.”

Their love story took a devastating turn when Mark started having difficulty walking and speaking. After a few doctors’ visits, tests revealed a tragic diagnosis.

“The doctor said ‘I hate to tell you this, but you have ALS’,” explained Debbie, who still works at Grimsby Sobeys.

The diagnosis came in June, 2011.

“He knew what ALS was, so when he got the news we just cried, cried and cried because ultimately it’s a death sentence,” she said.

ALS has no known cause, no effective treatment and no cure. ALS attacks and destroys the motor neurons in the body, eventually denying the ability to move, speak and –– in the final stages –- to breath with life expectancy of 2-5 years.

Mark was just 47 years old when he was diagnosed. He passed away in October 2012, two weeks before his 50th birthday.

“He remained active until he absolutely couldn’t move anymore which was about nine months after his diagnosis,” she explained.

The couple tried to live a normal life after the diagnosis.

“He continued to fight the disease and tried to remain as independent as possible,” she said.

The terrible effects rapidly took over. At first he had to use a cane, then a walker, and in April of 2012 he lost his ability to speak using his IPad to communicate.

“Even through it all, he still laughed and smiled every day,” she said. “He taught me not to sweat the small stuff because that doesn’t matter. I want to be a better person, like him.”

Debbie and her co-worker Jeff Pay have organized a fundraiser to be held at Grimsby Sobeys on Sunday, June 1 to raise money and awareness of ALS in the Niagara Region. Jeff witnessed two friends of his suffer the same fate as Mark from ALS.

The event will run from 11 a.m.-4 p.m. and will be a family event with a BBQ, beverages, face painting and more.